Surgeons confused by Living Wills: Important Information for You and Your Aging Parent

by Dale on December 26, 2011

(Thanks to our guest blogger for highlighting a matter that is critical to quality of life and death for everyone! Douglas D. Germann, Sr. is an Elder Caring Lawyer in South Bend, Indiana. His contact information is at the end of this post.)

Here is an article from the Annals of Surgery which headlines that surgeons don€™t discuss end of life care, especially when they are performing risky procedures. (To read the article, click here. More details are available by clicking here.)

But, if you read more closely, at least in this Reuters news piece, what you see is that the surgeons feel their hands are or may be tied by a paper that says No CPR or DNR (do not resuscitate) or the like. So some do not want to ask in the first place.

The surgeons are right to be confused and frustrated by Advance Directives. What they need to do their healing is to have a flexible, reasoned approach to the exigencies that come up during operations.

What is needed is someone they can consult (an authorized and informed, but more than that, reflective and caring person) and with whom they can make a decision.

And that spells just one thing: Conversation, lots of conversation before the day of the operation with a trusted person to whom you have given a broad POA. Conversation, lots of continuing conversation.

(To reach Doug at his website and blog, click here. You are invited to post comments there as well.)

I have made Medical Directives. My husband who has mild Alz. and has stage 4 cancer, has said he does not want to be restustitated, but I do have the power to say something as I am his agent. I think I would want them to do everything humanly possible to keep him alive. I told Ken’s doctor this a few months ago when were discussing his situation…not only because I love him and want him here, but I depend on him, too.

Doctors should always feel free to talk to the family. If you can’t talk to the family, how do you know what to do? I can understand that frustration.

Thanks for pointing out this very important question. You have helped a lot of people today.

Thanks for sharing your difficult situation,Eve..
But my question here to Dale is:
Who has the legal right to decide if Eve’s husband is resucitated in a medical emergency. Even if Eve is his agent, if he stated in an advance directive that he wanted a DNR and he was considered competent when he wrote the directive, doesn’t that take precedence??.

In what a place you find yourself! We must have nothing but an open heart for people who face such terrible and wrenching decisions.

As spouse, many states’ laws give you a say; as POA, your husband has given you a say; and physicians and surgeons will quite naturally give your choice much weight.

It is difficult to separate out what he wants, what you want for yourself, what you want for him â€œfor better or for worse.â€ what various doctors give as their opinions (colored as are everyone’s by their own experiencesâ€”with patients and families), what your children and your husband’s children want, what other less informed family and friends suggest, what Ken’s religion might teach, what your own conscience is telling youâ€”and then come to some sort of a decision.

You have left it unstated how Alzheimer’s is affecting Ken. If he knows his own mind and heart well, then I suspect you will want to give more weight to what he says he wants. If you have less help from him, then it becomes even more important to converse: you can still find ways to converse with him. For instance, you could journal a conversation with him in odd moments during the day. You ask â€œWhat do you want?â€ â€œWhy do you want that?â€ You write down what your heart is telling you he would reply. In this way, you will be exploring your own memories of how he thinks and perhaps going even deeper than that.

You might also engage his children and yours and his siblings or other close relatives to remind yourself how he thinks and what is important to him? (Protect yourself from their opinions by asking not what you should do, but things like How was Ken with pain? Did he ever say anything about being on life support?) Is being conscious and alert important to him? How is his tolerance for pain? What level of pain is he experiencing?

Eve, what are Ken’s hopes and dreams? What are his hopes and dreams for a good death?

You have said â€œYou have helped a lot of people today.â€ In what ways do you think this is true for you, Eve?

There is no need to answer me, but a deep need to have these conversations with the important people in your life, including yourself, because eventually â€œeverything humanly possibleâ€ will not keep any one of us alive. And then, doing the most loving thing will be what lasts.

About two weeks ago I shared with one of my doctors my wishes for end of life medical decisions. He told me matter-of-factly that I had less to say about it than my wife. He was speaking in a very truthful, practical way, trying to disabuse me of the papers. The living and those with voice will be heard more loudly than any piece of paper.

Mary Ellen, you ask a difficult and perceptive question. The deeper question is beyond what is legal to what is right, what is loving. If Uncle Ed is old, exhausted and in excruciating pain, is it loving to keep him in that bed for another 6 years or even 6 minutes? Uncle Ed has the right to hold his own hope, even if that hope is to say â€œenough.â€

There is a practical issue too: no matter what we write in our advance directives, the emergency we get is not the emergency for which we planned. So the paper almost never has the answer to the gut-wrenching decision we need to make.

What are our guides? First is always, What would Uncle Ed want? Then, and only if there is no clear answer, What is best for Uncle Ed? This is what the law usually says; this is also what loving says.

Ultimately, the answer to our decisions comes from knowing how the person thinks and feels, what’s in his or her mind and heart. We need to get inside them. The only way our human race has found to do that is conversing. Then we can make the decisions we know they would have us make. Then we can say we have loved them well all the way through.

Thank you Eve, Mary Ellen and Doug for your comments and for your caring, not only about your own loved ones but also for all those out there who read this post, hear your stories and gain insight for their own families. Please keep sharing this important message!